I'm not sure if I mentioned the story about this young man in my blog but it is so very close to my heart. You see L.J. who was 15 this last fall, also had Prader-willi syndrome. As I understand it he had eloped off and on for many years, but in October he was hit by a vehicle after getting ice cream from a convenience store in the middle of the night. In this families case he was in a group home that was supposed to keep him safe but the drive to find food was so strong and they (the group home) were not prepared for the level of safety that someone with PWS needs.
The last couple of months we have been dealing with the "system" in our own home to ensure we can keep our own son safe. We have had an alarm in our hallway since last year and now have an alarm on his window. We do not feel this is enough. My husband will be installing a type of lock that will deactivate when/if the smoke detectors ever go off. This isn't something we have decided lightly. We have been through our local mental health service provider and the local fire marshall. We have even been in contact with a local senator as we felt our concerns were not being taken seriously. We let many professionals know about L.J.'s story and finally we have some support to make sure we keep our son as safe as possible.
On Saturday we went to a 5K that L.J.'s family was doing as they are setting up a foundation to build a group home for individuals with PWS in the state of NC. Most group homes are not equipped to take care of people with PWS with monitoring for food control and the other measures needed to keep them safe. It was a very nice event for a wonderful cause. We were able to meet his sweet family and also two other families that have children with PWS. (I'll post a group shot with the three kiddos after I get permission from one of the other families) It's really amazing to get together with other PWS parents that totally "get it". You do not have to explain your choices for what you feed or don't feed your child and have to deal with "that look" that some give you, that you are over protective. They understand that you do what you have to do to meet the needs of your child. Here is one picture though I took that is the backs of A~man walking with a young man with PWS that is about 5 years older than my son. It made this silly mama teary.
We really enjoyed our little weekend trip and hopefully it will be the beginning of some roadschooling trips for this spring/summer. I am devising a plan to make some extra money for some fun educational trips. I REALLY want to go to SD this summer as the kids have only been there during the cold months. There are so many fun sights between here and there and I want to explore. So...I ordered a postal scale off of Amazon and I'm hoping to start selling on Ebay again. Years ago we were really big into selling there and I'm hoping to make some traveling money.
Here is the link to L.J.'s Foundation page if you would like to read more about it.
The last couple of months we have been dealing with the "system" in our own home to ensure we can keep our own son safe. We have had an alarm in our hallway since last year and now have an alarm on his window. We do not feel this is enough. My husband will be installing a type of lock that will deactivate when/if the smoke detectors ever go off. This isn't something we have decided lightly. We have been through our local mental health service provider and the local fire marshall. We have even been in contact with a local senator as we felt our concerns were not being taken seriously. We let many professionals know about L.J.'s story and finally we have some support to make sure we keep our son as safe as possible.
On Saturday we went to a 5K that L.J.'s family was doing as they are setting up a foundation to build a group home for individuals with PWS in the state of NC. Most group homes are not equipped to take care of people with PWS with monitoring for food control and the other measures needed to keep them safe. It was a very nice event for a wonderful cause. We were able to meet his sweet family and also two other families that have children with PWS. (I'll post a group shot with the three kiddos after I get permission from one of the other families) It's really amazing to get together with other PWS parents that totally "get it". You do not have to explain your choices for what you feed or don't feed your child and have to deal with "that look" that some give you, that you are over protective. They understand that you do what you have to do to meet the needs of your child. Here is one picture though I took that is the backs of A~man walking with a young man with PWS that is about 5 years older than my son. It made this silly mama teary.
We really enjoyed our little weekend trip and hopefully it will be the beginning of some roadschooling trips for this spring/summer. I am devising a plan to make some extra money for some fun educational trips. I REALLY want to go to SD this summer as the kids have only been there during the cold months. There are so many fun sights between here and there and I want to explore. So...I ordered a postal scale off of Amazon and I'm hoping to start selling on Ebay again. Years ago we were really big into selling there and I'm hoping to make some traveling money.
Here is the link to L.J.'s Foundation page if you would like to read more about it.
Thank you for sharing the info on locking and the beautiful website about LJ. Our thoughts and prayers are with his family.
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